The Portuguese Association for CDG (APCDG) has developed 2 short surveys to assess the needs and solutions for future therapies among CDG Families and Professionals.
The Medical Executive Board met in Brussels with representatives of the Subnetworks, Work Packages and the Patient Board as well as the Coordinator and Vice-Coordinators.
Glycosylation is an essential biological process that adds structural and functional diversity to cells and molecules, participating in physiological processes such as immunity. The immune response is driven and modulated by protein-attached glycans that mediate cell-cell interactions, pathogen recognition and cell activation.
The presentations from our first and second webinar on the transition from childhood to adulthood, a MetabERN/SSIEM collaboration.
The new CPMS technical guide includes recommended browsers for best user experience, IP addresses to be whitelisted by Hospitals and bandwidth requirements.
The European patient organisation MPS Europe has asked people with MPS, their relatives and their physicians: What is your MPS Challenge?
MetabERN was granted the second call for INEA/CEF for a total of 210.000 euros. The project proposed to the evaluators will focus on three main activities: the CPMS, e-Learning and telemedicine.
ERN activity report of the European Collaborative Platform and Clinical Patient Management System usage for the month of March.
The European Joint Programme on Rare Diseases brings over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.
The ERN coordinators met in Brussels on the 25th March 2019 and addressed several key aspects of the networks' development. The main discussions focused on the on-going designation by the Member States of Affiliated partners, both from a procedural point of view and concerning the practical implication for the ERNs.
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